Thousands of Women Are Born Without a Uterus. A New Procedure Offers Them Hope

On an afternoon in November, a couple hosted a birthday party for their 1-year-old son. As family and friends gathered around the child to sing “Happy Birthday,” his parents addressed a milestone that reached well beyond the room.

“It was emotional,” recalls the mother. “It took a lot more than a nine-month pregnancy to get him, and we wouldn’t be where we are without everyone’s support.”

Many parents will tell you their child is miraculous. But the mere existence of this particular boy, who just a month earlier had taken his first steps, brings the miracle somehow closer to literal–and not just for this family. The boy’s birth was historic, the first time a baby had been born from a transplanted uterus in the U.S., and offered hope to women around the world who thought they’d never carry a child.

“We didn’t just do this for our family. We did this for families down the road,” the mother says.

When she was 16, the now-mother visited her doctor, concerned that she hadn’t gotten her period. It was during that first gynecological exam that her physician gave her a diagnosis she felt ill-equipped to handle as a teenager: she was among the 1 in 4,500 women worldwide with Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome, which means she was born without a uterus. Though she had functioning ovaries, there was no way she could get pregnant or carry a baby. (The couple asked that their identities not be revealed in order to protect their privacy.)

“Even at the time, I asked about the possibility of the transplant,” she says. “I was told that wasn’t possible.” Years passed, and the woman met a man and fell in love. She found the right moment to nervously share her secret with him, something she had gone her entire life without anyone but her immediate family knowing. Would he still want to be with her if she could never get pregnant? He said yes.

They married, and soon began getting the predictable question from friends: “When are you going to start a family?” The couple wanted kids, badly, and it stung knowing that despite being young and healthy, they’d not experience a pregnancy together. The woman became depressed and started seeing a therapist. About a year into her sessions, the therapist passed her a news article: hospitals in the U.S. were launching uterus-transplant trials.

In 2014, doctors at Sahlgrenska University Hospital in Gothenburg, Sweden, became the first medical team to attempt to transplant uteruses from living donors into other women so they could give birth. The nine recipients, all in their 30s, had been born without a uterus or had had theirs removed because of cervical cancer. The trial resulted in eight births.

Transplant doctors around the world paid attention, including Dr. Giuliano Testa, chief of abdominal transplantation at Baylor University Medical Center in Dallas. After hearing a presentation about the procedure, he knew it was something he wanted to try. “Going from organs that save lives to one that produces lives is simply fascinating to me,” he says.

Transplant and reproductive-health experts considered the Swedish trial to be a triumph, but unless it could be replicated elsewhere, it might as well be considered a fluke. “We have to collaborate and share our knowledge,” says Dr. Liza Johannesson, an ob-gyn and uterus-transplant surgeon on the Swedish team, who moved to Texas to help Baylor’s program. “If no one can repeat it, it’s not worth anything.”

Testa recruited a team of physicians at Baylor for a uterus-transplant clinical trial–experts in transplants, obstetrics, fertility and psychology–and they sent a call out for female volunteers without a uterus who would be willing to undergo a major surgery for a chance to have a biological child. They also recruited women who would be willing to donate their healthy uteruses for the transplants. “When you donate a kidney, you do it to help someone live longer and get off dialysis,” Testa says. “For these women, they are donating an experience.”

In September 2016, the hospital performed its first four transplants in a period of two weeks but had to remove three of them after tests determined the organs were not receiving normal blood flow. “I am not ashamed of being remembered as the guy who did four in the beginning and three failed,” Testa said at the time. “I am going to make this work.”

It wouldn’t be long before he made good on that vow, when, in November 2017, the woman whose transplant was successful gave birth to that first U.S. baby via C-section. “The cliché is that you never know how much you can love someone until you have this baby in your arms,” says the mother. “It has opened my eyes to a whole new world–to how deeply I can love.”

Dr. Robert T. Gunby Jr., the ob-gyn who delivered the baby, had performed nearly 7,000 births in his more than two decades at Baylor, but for the first time in years, he was overcome with emotion. “When I started my career, we didn’t even have sonograms,” he says. “Now we are putting in uteruses from someone else and getting a baby.”

The mother received her transplant from a registered nurse named Taylor Siler, who had seen a segment about the Baylor program on the news. Siler and her husband had two kids already, and she wanted to offer someone else a chance at motherhood. “I just think that if we can give more people that option, that’s an awesome thing,” she says.

Donors like Siler undergo an extensive physical- and mental-health screening process before getting approval for the trial. For those who are selected, it typically takes about five hours for doctors to remove the uterus, and recovery is about 12 weeks.

Once a woman in the trial has received the transplant, in a surgery that takes another five hours, she waits to recover and achieve menstruation, usually about four to six weeks later. If her transplant is successful, she can attempt in vitro fertilization (IVF) three to six months after the surgery. The women in the trial have functioning ovaries, but attaching them and fallopian tubes to the uterus would further complicate what is already a delicate process. Because implants can increase infection risk, and the drugs the women must take daily to prevent their immune systems from rejecting the new organ are potent, the transplants are removed at some point after the birth.

Siler and the woman who received her uterus exchanged letters on the day of the surgery, and the woman sent Siler another one when she was pregnant. They first met a few weeks after the baby’s birth, and their families have since become close.

Compared with other transplants that he regularly performs, like liver or kidney, after which surgeons know within minutes if the organ is working, Testa says waiting through the pregnancy after the uterus transplant felt excruciating. “I was already nervous when my wife was pregnant, and this felt worse, like it was my pregnancy,” Testa says.

Baylor wasn’t the first U.S. hospital to attempt a uterus transplant. In February 2016, the Cleveland Clinic in Ohio achieved that distinction, using an organ from a deceased donor. Less than two weeks after the transplant, the woman got an infection and the uterus had to be removed. The clinic paused its program but has restarted it and completed a second transplant. The recipient is healthy, though the hospital is not providing further details.

Other hospitals in the U.S., including Penn Medicine in Philadelphia and Brigham and Women’s Hospital in Boston, are exploring similar trials, and hospitals worldwide are also experimenting with the procedure. In December 2018 it was announced that the first baby born from a uterus from a deceased donor had been delivered earlier in the year in Brazil.

To date, more than 400 women have volunteered to become donors in the Baylor program, and more than 1,000 others have contacted the hospital about becoming a recipient. Of that number, 800 have completed a preliminary screening. The hospital performed 10 uterus transplants in the first phase of its trial, from both living and deceased donors, and has begun more surgeries in the second phase, though Baylor is not saying how many. In addition to the mom of the 1-year-old, a second woman (who is also keeping her identity private) gave birth in February 2018 to a baby girl, and the other women with successful uterus transplants are in different stages of trying to get pregnant.

Uterus transplants are expensive, with Baylor’s estimate putting the cost around $200,000, and they’re not currently covered by insurance. (Baylor is covering the cost of the transplants in the clinical trial.) There’s still a long way to go before such transplants can be offered as a standard treatment. Even then, several members of the Baylor team say, they shouldn’t be viewed as a replacement for other approaches to having kids, but rather as another option.

“I would never disregard the desire of a woman to want to experience a full pregnancy–the whole process,” says Dr. Gregory J. McKenna, a surgeon on the transplant team who says he and his wife experienced their own fertility difficulties. “Yeah, there are other solutions out there, but the intense desire to have your own children is enormous.”

Baylor will follow both newborns as part of the study for the foreseeable future. The goal is for the births to mark the beginning of a new field of infertility-treatment research, rather than to be outliers.

“It was the best feeling in the world to hear her cry for the first time, and we are blessed to have her,” says the mother who gave birth in February.

She and the mom of the first baby have become friends, talking almost every day. Sometimes they share tips like what to do when one of the babies has a fever. Other times they express disbelief.

“I just had a moment,” the second mom recently texted the first. “Can you believe we are both moms?”